This comes from a posting by Bruce Kramer, a person afflicted with Lou Gehrig’s Disease. His writing offers hope for those suffering with a debilitating disease and for those of us finding our way out of dark places.
The elevator broke down in my building, and I was not in my third-floor condo at the time.
It soon became clear that the elevator would not be fixed this day. And as we began to plan for the move into a hotel (I won’t even describe the logistical planning and the amount of equipment in addition to the Hoyer lift required), an idea from one of the caregivers online came through. “Have you considered calling the fire department?”
Within 20 minutes three fire persons – Garrett, Lisa, and Boomer – had figured out how to slip a cloth stretcher underneath me and to carry me up to the third floor. Our lovely neighbors at the other end of the hall loaned me their powerchair for the next 24 hours. And some off-balance balance was achieved.
This took place on Wednesday, and I have to admit that it wasn’t until Saturday that I began to feel like my old self again. The ALS person I have become is so easy to disrupt, so easy to push off balance, so easy to move into painful and difficult spaces, that I hardly recognize him. Yet I know it is me. I know that the energy I expend to create a space that is calm and fulfilling and centered is much more than I realize. The experience of being carried up three flights of stairs speaks of how simply the center can be pushed to the side.
I don’t tell you this for empathy or pity. I tell you this because as cliché as it may sound, dis ease has taught me that change is the one constant on which I can depend. And what I am trying to learn is how in the face of such constant change and loss, joy and life emerge. I know that they do. Many times, even in my ALS normal, I’ve experienced joy in the face of sorrow, gain in the face of loss, constancy in the face of disruption. And yet, I also have experienced just how human and flawed I am. When will I learn that none of this is anything more than the illusion of safety? When will I learn that joy and sorrow, loss and gain, constancy and disruption are nothing more than different sides of the same human experience? When will I learn that balance requires that both the positive and negative must be present?
Sometimes, it takes the overwhelmingly physical teaching of the local fire department to remind you that spiritual space is the counterbalance of physical loss. Sometimes, it takes enormous imbalance, tipping points exponentially reached to again experience the quiet center. Sometimes, it takes dancing on the head of the pin.